…“Try not to worry, I’m sure it’ll be fine” I swear I am gonna scream!!! I had a bone scan on thurs, after weeks of back ache and a sore pelvis which has got progressively worse. Given the fact that I had 25/28 positive nodes and am HER2 + but unable to have Herceptin (due to heart failure), I have been made aware right from the start that the chances of my developing secondaries is pretty high. I’m the first to admit that since I was dx in march last year I have become totally paranoid, thinking its more likely to be ‘when’ I get mets rather than ‘if’. However, this recent pain really has started to worry me.
So, my onc arranged for me to have a bone scan, as previous ct and bone scans had shown ‘hot spots’ on my spine. I know exactly what he’s concerned about and naturally this makes me worry too. Before the scan on thurs, loved ones were obviously being upbeat and optimistic. More so once I had had the scan as I came home terrified 'cause the radiographer took loads of extra images of my spine and pelvis “just while you’re here!”.
Now I am playing the waiting game and it is driving me mad already. What is making this whole time worse though is people that mean well telling me not to bl**dy worry!!! How am I supposed to do that??? With all due respect I was told not worry when I found a lump as I was too young etc, etc, to get bc, and look what happened there!
So, “forgive me if I don’t share your optimism but I’m bloody worried about this”! (Thats what I want to say to people but daren’t as I know they are probably at a loss as to what else to say).
Apologies for that rant but I just had to get it off my chest. Anyone else waiting for test results and in a similar position?
Oh Kelly - sorry you are getting all be positive stuff. You have every reason to be worried, realistically you do have a strong chance of developing mets. A corner of you can hope that this time you haven’t. As you know I had a bone scan last week and although I keep saying to my self it is only arthritis I worry quietly to myself. I have pain in my ribs op side to surgery near my should blade, mid way between the shoulder and elbow and base of thumb near my wrist which is quite debilitating, . As the BCN said it is not the usual places for O/A. also have quite a few nodes affected (16/20) a thay found a lot of cancer cells in the surrounding tissues. Also had the unnerving experience of the radiologist going back and doing extras of my rib cage. To be honest that is why I did not tell anyone, and only spouse it was a routine scan because I couldn’t put up with all the 'be positive’stuff. At the momemt I am taking out on my over grown garden.
The best thing to hold onto is the fact that there is a lot than can be done for bone mets these days - people seem to have a good qualitiy of life for years with them.
You have a good rant - we are right in there with you
Let us know what your results are.
cyber hugs Jacqui
great to hear from you, thanks so much for your message. Playing the waiting game is pants isn’t it?! The longer I have to think about it the more convinced I am that something is gonna be wrong. I had a drink and a smoke on friday which is mad as I’m pretty much tee-total these days due to the heart failure and I haven’t smoked in yonks!!! Actually, truth be told I am having a little glass of wine as I type this, just finishing off the bottle from friday.
I really really hope we both get some good news. I suppose I have only got myself to blame for encouraging all the positive stuff. Because I think that the news is gonna be bad I told all my friends and family about the bone scan 'cause I didn’t want to just suddenly hit them with secondary bone cancer. So, needless to say, the positive comments came flooding and I appreciate its because its their job to look on the bright side and cheer me up.
You make a good point about that fact that there is an awful lot they can do for bone mets these days. I have been trying to tell myself that for a while now. Seeing it written down though has really reinforced it so I’m truly grateful,
Take care and I wish you well as you wait for your results,
I had to have scans last year to include whole spine, liver and chest, because I had 15/20 nodes and fully aware of my bad prognosis I really was frightened of the results, had to be recalled for the liver one which was bloody awful, but luckily all ended as clear.
Like Jacqui I didn’t tell anyone other than OH, sister and 1 mate, this is my way of coping and I dont have to listen to sh*te or keep getting phone calls. But to make me more paranoid re results and prognosis my scans were ordered in order for PS to agree to do my recon and I knew damn well this is not routine for those with good prognosis.
Enjoy your wine, hope it is nothing sinister on both your scans and you get results quickly.
Oh I so know that ‘try not to worry’ nonsnse. I am rude enough to tell people I don’t share their bloody optimism when needs be.
Waiting for tests and thinking about the worse case scenario is the pits but I now see it as useful preparation time for managing the news if it is bad.
Of course you are worried!You are beyond worried you are terrified but can hope that whatever they find the pain will be treatable and you will cope love,you know you will.xx
Sorry you’re having to go through the wait yet again. I’m convinced that until you’re in our position your don’t realise how patronising the “don’t worry, I’m sure it’s nothing”, sounds.
We all worry and aches etc, that don’t seem to disappear, and we know that all too often it’s something. We hope it’s not.
My chemo nurse had a scare and I told her “I’ll not say what everyone says. I’ll say - I HOPE it’s nothing”
I hope your scan turns out OK.
Back to last year, when Daughters’ hubby left and you called him am a…hole. She’s got a new feller and he seems very nice. It’s also looking like A…hole was seeing someone.
Life is starting to look good again in our family, I hope that things soon look up for you.
thank you so much for all your messages,they are very much appreciated. Well, I am still playing that horrid waiting game so have decided to try and do something about it. Before well wishers (or even myself!) drive me insane! So, I have just called my trials nurse as I tend to use her as my first point of contact for anything oncology wise rather than my bcn. I had to leave a message so hopefully she’ll get back to me sometime today.
Jane - You are quite right in what you say about waiting for tests and thinking the worse being useful prep if the results are not so good. I think if I can take some time out now to get my head round the possibility of having secondaries, somehow that will help me if the time should come that my onc tells me what I suspect.
Marilyn - I remember only too well last years troubles with your daughter and her hubby. Seems we were right to call him an a**ehole then eh??! I’m so glad she’s seeing someone else now and things are on the up for you and our family.
Take care all and I’ll be sure to keep you posted!
My lovely trials nurse has just called. Its a good job I spoke to her to be honest as it turns out my onc is on holiday 'til the 25th!! She said the results aren’t in yet but she would expect them to e back later today if not tomorrow. If all is fine she’ll ring to put my mind at rest, otherwise I’ll be getting a call asking me to come in for an appt.
Really hope that you get that phone call sooner rather than later - and that it is good news!
Like you I absolutely hate the “it’ll be alright” brigade though I do acknowledge that they probably don’t know what to say so feel they have to say something “positive”. And like Jane, I do tell them that I can’t be positive like that as (trying to be realistic) I know x y z (whatever current worry is) is a very real possibility. I had a horrendous experience on 1st dx when I had had lots of cysts before, developed what I thought was another one and so trotted off to the hospital by myself to have it aspirated. The shock of finding that it wasn’t a cyst and that they were “99%” certain it was cancer, was horrific and I never want to be so unprepared again. I still find it so unhelpful though (and at times very annoying if they insist I should be positive) when people try and reassure me that everything will be ok - makes me feel as if they think I am making a fuss about nothing at times!
I try to be as realistic as possible and take into consideration what is the most likely outcome whilst being aware of what the worse outcome might be and talking myself through how I would deal with that. Having an action plan for the worst scenario seems to help me. I now have liver mets and have had many ups and downs and stressful waits for results etc since dx of secondaries last June. However I have coped with it all (with my “worst scenario” action plans some of which have had to be used, others happily discarded - or more likely in my situation, put on one side for the moment). I am currently doing well on the chemo and able to enjoy life greatly (still working 4 days a week and going away with family and friends etc) - long may it last! As Jacqui has said, people can live with bone mets with a reasonable quality of life for many years, so do build that into your worst scenario.
Waiting is awful and wanted to let you know am thinking of you and hoping that you get a phonecall to put your mind at rest. I find it so difficult when well meaning people tell me not to worry. It is total madness when everyone who has had bc went through the initial diagnosis being told not to worry, or it’s probably nothing - in my case too I was told I was too young so it was very unlikely so not to lose any sleep over it and that was by my GP. People mean well, but with due respect they don’t have a bl88dy clue how impossibly hard this can all be, when you have to try and be realistic about scary sh8t all the time.
Sending you a hug, and huge cyber glass of wine and lots of hope
thank you a so much for your kind words and support Especially when you’ve all got so much to contend with in your own lives. Well, the results are in and there is no evidence of metastatic disease in my bones!! I am shocked and amazed to be honest. Soon as I put the phone down from my nurse I had one of those moments where you wonder if you’ve just dreamt that whole conversation! All my lovely well-wishers are over the moon and have naturally said things along the lines of “see, I told you it would be alright”! Whilst of course I am pleased with my result I am not naive enough to think that I am out of the woods just yet. I am having a brain scan shortly, yet more worry I’ve no doubt! Also, the pain hasn’t miraculously dissappeared so I intend to monitor it closely. Don’t wish to be doom and gloom I just wanna be realistic.
Thanks so much, and good luck and best wishes to all,
I am so pleased Kelly. Have really been thinking of you, especially as we started out on all this at around the same time. Your posts have often made me laugh or made me think, and I am so happy you’ve had some good news.
So pleased you have one set of good results. I am sure you got a load of ‘told you so’ comments, meant in the best way. Thank goodness this time they were right. I do agree with you in many ways it is better to be realistic and accept the worst may happen, in a sort of calm and organised sort of way.
Really hope the brain scan comes good for you too.
Still waiting for my results - think I will phone Monday as I have to make some job decisions.
Really pleased Kelly (I even have a stupid superstition these days that if I worry lots and lots about say a CT scan then the results won’t be as bad as I fear…)
I know that adrenalin rush when things are better than we feared (and yes the down to earth realism which follows too)
But right now have a drink and celebrate the moment.
I can’t believe my friend has just said to me that I have a great life, mainly coz I have a lovely boyfriend and she doesn’t. I sometimes wonder what is going on in people’s minds I did remind her that I have to worrry for every pain and look at my scar and horrible curly hair so I hope it got through. I am sure she didn’t mean it but sometimes I would like people to think before they speak
Bubbly … I feel like you do …I am always being told I am so brave !!! I can tell you this I bloody well aint ,they see what I want them to see …I am fast approaching a year since dx and have the spec sometime in Oct …I am sure that I cant have a mammo cos I had implant recon …will I have an Ultrasound how will I know if is anything there or is it too soon to tell ??? I wonder if I will ever get through a day when I dont think of cancer !!! Thats why I come on here to you guys cos you all know what it feels like and can tell it like it is so THANK YOU all and keep on telling me xxxxxxxxxxxxxxxxxxx
hi maz its really makes a difference coming on here…i tend to read more than add to the comments I sometimes find it hard to know what to say, but i love the way everbody supports each other